My name is Jake Kozul. I’m an overall very healthy (until about 7 weeks ago) 36 year old guy, who after a bout of food poisoning, saw my liver levels spike and have doctors scratching their heads. I have had blood tests every six months just to see how my system responds to my diet (I have Ulcerative Colitis), so I have a firm baseline 6 months earlier not showing anything, good liver and blood panel,and have been for past 24 months…six months later, after the food poisoning bout CA19-9 came back elevated, along with all of my inflammatory liver markers. I have been through MRI and CT imaging, with nothing but an inflamed liver (no lesions). As we keep, crossing things off, the options are becoming fewer and fewer as to what’s causing my illness.
Although still in diagnostic phase, I’m trying to figure out what symptoms people who where diagnosed with PSC had early on to compare with what I am experiencing. Can you elaborate on that?
My apologies for the paranoia, but it is a scary and frustrating experience, as I am sure you all know better than I, so so insight into your early symptoms before and at diagnosis would be very helpful.
I greatly appreciate your time,
Jake Kozul (Phone number removed by moderator support. Please share in private messages)
Welcome to the site. First off, I hope and pray that your health gets better!
I pray that your liver heals and that any signs of disease or dysfunction are gone. I would encourage you to not worry and if it comes to it get a second opinion.
Here is how my husbands progression went-
age 18-severe ulcerative colitis. Grim Diagnosis-told cancer by age 30 likely, needed colon removed, meds for rest of life.
age 22-completely healed-did Daniel Fast, whole food for 6 monts
age 26-lyme disease
age 27-jaundice in eyes, fatige, not functioning well
Diagnosis of elevated liver enzyes, psc via scan saw enlarged bile ducts.
age 28-blockages, pancreatitis, liver infection, mulitiple ercp’s
age 30-transplant evaluation
currently…waiting for transplant…
Jake,
Hi and thank you for posting. I know the unknown is a very scary thing. Have you run your MELD score against the most recent labs? MELD shows based on specific lab numbers how sick your liver is. It’s not a perfect scoring system but it’s what they use to decide who gets a liver transplant if a patient gets sick enough for that.Here’s a link to do that. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
For me with PSC earlier indicators would be weight loss and the onset of some pretty serious itching, general body aches, etc.
Was the MRI an MRCP with and without contrast? You really need the contrast to get a good look at the bile ducts of the liver.
Are you seeing your PCP or GI doctor or have you been to a specialist? If things continue to worsen I’d encourage you to seek out a transplant hepatologist. Don’t let the word transplant scare you, it’s the hepatologist part that’s so important. These are doctors that specialize in the diagnosis and treatment of liver disease.
I do hope things improve. Let us know how we may be of further help.
I would agree with Mark and say that you should seek out a transplant hepatologist or a rare disease primary care doctor.
My partner was a boy when his PSC was discovered. He had already been diagnosed with colitis but it was after suffering what felt like food poisoning that his parents/general doctors took a step further and had him seen by a specialist.
He was asymptomatic with use of his colitis medicines for many years, staying up to date with his gastroenterologist.
Sharp pains and jaundice were the signs that showed his condition had started to progress.
I’m sorry that you had to find yourself in this position looking for advice and support. I imagine this is difficult for you. I will say, although this is a serious condition that you may or may not (God willing) have to deal with, try not to frighten yourself with the overload of information that may or may not be useful to you. PSC is unique in the sense that it effects people differently.
I hopeful that you will find support in this group. This site was a blessing to me.
Sorry guys, I was trying to send that just to her and not to reply to the thread. I’m on some new meds and feeling loopy.
As far as diagnosis goes:
Last September from ER to hospital admittance with fever of 103 and tenderness in gallbladder area. They kept trying to find a blockage from a stone in images, but couldn’t see one (thinking it was my gallbladder). Finally decided to do ERCP and see what they can find. Found intrahepatic blockage and put in a stent. Immediate relief of pain and fever.
Had stent removed in October and GI confirmed diagnosis. My liver ducts looked like “the Rocky Mountain Hwy” according to my hubby, when the doctor talked to him after removing the stent. Gallbladder removed in December. Hepatologist seen twice now and confirms diagnosis of Sclerosing Cholangitis. He says that he thinks it most likely Primary (totally liver related), but reserving a tiny bit af doubt and that it might be secondary (brought on by gallbladder).
Thank you much…I am fortunate that I have not am still looking like I am in good health…still living like I did before minus diet and occasional ab pain. I am working to get a Referal to a heptologist, immunologist and talking to a holistic medicine provider this week. The rare disease primary is some thing I hadn’t heard of. What does that entail and what is the difference from my typical primary?
Thank you Mark…I have a referal to a heptologist now…so a transplant heptologist is what I should be looking for?
I did have the MRI/CT with contrast…fortunately I am catching it early it looks like. I have not had any physical symptoms other than discomfort and some occasional fatigue.
I will ask my GI about getting my MELD score…that sounds helpful.
Jkozwmu,
Hello again. If you are seeing a hepatologist you are doing fine. Most of them are transplant hepatologist or have strong connections with transplant hospitals. The main thing is to be seeing a hepatologist and not an ordinary GI.
And yes, always ask for copies of your lab reports and you can figure your own MELD score to track your progress. I maintained a spread sheet across my years with PSC and it helped in tracking the progression of the disease.
Here’s the MELD calculator you can figure it out yourself from your labs. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
It sounds like you’re on the right track to better understanding the
condition and I’m glad to hear you are doing fairly well.
As far as the rare disease primary care doctor, I found our doctor by
examining our insurer’s preferred primary care doctor’s bio pages,
one-by-one looking for specialties or areas of interest. Tedious, I know,
but it’s your health… It’s worth the extra effort in my opinion. If you
don’t mind me asking, what medical insurance do you have?
The same can be said about your Heptologist. Try to get a referral to a
doctor that specializing in liver transplants. You may not be anywhere near
the world of transplant but in my opinion, they are more knowledgeable
about the long term effects of PSC. It will also get your foot in the door
with a hospital team that will carry you all the way, meaning, should God
forbid your condition progress, you have a Heptologist (in a hospital that
handles transplants) that knows your story and can advocate a tad bit
stronger.
My partner was seen by a gastro. doc. at a local hospital/clinic for years,
he saw a hep. doc. annually at another hospital. When his condition was
more than what the local hospital could handle, he needed to start new with
better equip team/facility. We decided then to transfer to a larger
hospital that could handle all our needs in one place. California Pacific
Medical Center saw him for a few years and when he was in need of a
transplant, because he had grown with them, I truly believe that we were
treated like family and they advocated hard for the best treatment options.
I hope I was able to answer your question without too much rambling
Thanks again,
I am meeting with my GI next week, then referred to a heptologist which I’ll be meeting with in a couple weeks. I have Blue Cross through my wife’s law firm, but can change coverages in November. Fortunately, I have a pretty flexible career, so I can travel and do whatever I need to do to ensure the best care.
Thank you for the info, it certainly helps as I try to figure out how to handle this going forward.
Referring to your question in your initial post, my first symptoms were nausea, weight loss, night sweats, fatigue, dark urine, feelings of disorientation and blood in stools. It felt like one minute I was healthy and the next I had all the above and was diagnosed with small duct psc and chrons. I have to say the hepatologists I saw were amazing and very quick to work through all the diagnostic tests to arrive at the diagnoses. I was thinking just the other day what a great service they provide at diagnosing me, but once I had my diagnosis, they’ve just left me alone as there isn’t much they can do for me! I think the diagnostic side of medicine and perhaps surgery have come a long way in modern times. It’s the cures that they are still chasing!
Hi Merry,
Everyone is different, but my health was deteriorating to a point that I was listed for transplant at a MELD of 12. That was in January, 2015. It climbed to 19 in April and then 36 in July. I was then transplanted a couple days after that. Your 10 may hold for a long time, or things may progress more quickly. There are so many factors that determine when you need to be listed. I would be getting labs though at least every 3 to 6 months and when you hit 12-15 I would encourage you to ask your hepatologist to refer you to transplant. You still may be fine for sometime but it’s good to be on the list so if things turn for the worse you will be ready to roll. Good luck and let us know how things go.
